Contact us

Info for new members / about the group:

beth@downrightexcellent.org
Phone: 07930 281327

Information about fundraising/ business:

Nicky Farmer
nicky@downrightexcellent.org

Our address:

The Sundial Centre

11 Shipton Street

London E2 7RU

Our charity number is 1120863

 

56 comments

  1. We have moved to the London area recently. I am interested in getting my daughter (she is 3 yrs old) involved in your speech therapy programme. Will you please contact me with details.

    Cheers,
    Sunny

  2. My little boy, Andrew is now 4 years old and is due to start mainstream school in September. One of his main concerns is communication. He is having SLT in his nursery but I am not overly pleased with his progress. I would like to be able to contact other parents who have similar difficulties. I am also currently trying to get his nursery to get him statemented for school which is also taking much longer then necessary. Again, just to know there are parents out there who are in similar situation and to exchange advice would be wonderful.

  3. I have just read the article in the Mail this morning about your organisatin, and think that it sounds amazing. Sadly we live in North Yorkshire, but it is good to hear that people have taken such a positive approach. My son is now nearly nine, and I went through the isolation, the worry and fear that was highlighted in the article, and I too ensured that he missed out on nothing, taking my son along to everything that his older sibling attended like Tumble Tots, Song Box and Gym Club, and as a nearly 9 year old he is a keen member of our local Cubs and swims twice a week. I think that it is wonderful that you have a group that can share information and work together rather than the singular fight that the rest of us parents have to go through. Not quiet knowing if they are getting it right!! Well done.

    1. Thanks for your positive comments Heather. We all feel strongly that our children, as you do with your son, should not miss out on any opportunity available to other kids.

  4. Greetings,

    I suggest that the kids are given something to sing about.
    I suggest a great song with aspirational lyrics which will give them a sense of achievement – even if the wall is two lengths of rope about a foot apart on the floor.
    So, please check out Walking On A Wall at the above page.
    If they need the backing track to sing it, I could send an mp3.
    Cheers,

    Ed O’Toole

  5. Hi, I’ve just moved to London and was wondering if you had any volunteering opportunities. I’ve worked with children with Down’s before and volunteer on an annual basis, but I’m looking to extend this and do it more regularly,

    Thanks
    Sarah

    2. Hi Sarah,

      If you could give me a call 0207 7oo 6106 or 07846 533 001 we can discuss further.

      Many thanks Debra Carlin

  6. I read with interest the article in the ‘Daily Mail’ 26/10/10. We have a son with Down’s syndrome who is now 25. He has been a source of inspiration and never ceases to amaze us with his sense of humour and love of life. At the age of 15 he had to have an operation on his neck vertebrae to stabilise them as they had slipped and were beginning to cause paralysis. During his stay in GOSH he never complained and kept everyone going.He then had to wear a metal’halo’ for nearly 6 months but continued with daily life,as far as possible,and again was cheerful and happy. When he left school at 16, he spent 4 years at a residential college in Wiltshire.(We live in Essex) He loved the outdoor life. He has spent the last 4 years in a house with 3 others with learning disability,as he did not want to come and live at home. The house is wonderful and they participate in a variety of vocational courses, and community activity. Nicholas now serves on the partnership board which act as liason between the council and other disabled groups. Keep up the good work. There really is ‘Light at the end of the tunnel’ and is well worth all the hard work. Good luck with the group.

    1. Anne
      It is really inspirational to hear about people like Nicholas, and how they have thrived when given the opportunity. We hope that stories like his will become more common for all children and adults with disabilities. Thanks for responding to the article and best wishes to you and Nicholas.

  7. Hi

    I have a 3 year old boy little boy. Am not happy with the SLT he is getting from LA. Would love to get more info on joining your group and any advice on getting more help with SLT and to exchange advice with other parents

    1. Hi Vicky
      Where are you based. Our group meets in Islington, North London, although we have families from all over London and just beyond…

      1. we are based in SE London but could travel to Islington. Are any of your events at the weekend as little one is at nursery during the week?

      2. Hi Vicky
        We have groups on a Saturday for children of school age – currently 5 to 9 year olds. We’re having a meet-up for families and a sponsored walk on Sunday 26 June on Hampstead Heath if you’d like to come along. There will be plenty of other families in similar positions who would be happy to chat/advise you.
        Stephen

  8. My daughter Moyo is 2 on the 19th of September, i would love for her to join the stay and play session if there is space

    She was born at the whittington hospital and diagnosed with  Trisomy 21 shortly after birth.

    Hope to hear from you

    Thank you

    1. Hi Sola
      Sorry for the delay – I’m sure it would be fine to come along to the Stay and Play and find out more about the group. I’ll send you an email.
      Stephen

  9. Hi, I am a Speech and language therapist who has heard glowing reports about the work you do and wondered if it owuld be possible to come and observe this work. I am currently managing a MDT who deliver therapy to Downs kids and am striving to improve the therapy we offer. I would be very grateful if I can come and visit you all. I have CRB and work both for the NHS and independently. Kind Regards, Hazel Ellis

  10. I have a 5mth old with DS and I was hoping to meet other parents who are in the same position. Do we just turn up on Fri at 10am? Are there any forms to complete in advance?
    kind regards
    Mel

    1. Hello Mel
      The group runs termtimes only, so the next session will be Fri 20th April. No forms to do in advance. There is a ‘stay and play’, and parents will be in and out as their children attend Speech & Language Therapy sessions.

  11. Hi, my name is Dani and I’m 23 years old. I am really interested in working with children with downs syndrome, as I have always volunteered with special needs youth clubs etc. Do you have an email adress that I can forward on my details too please, thank you ever so much. Dani.

    1. Hello Dani, I don’t think anybody ever replied to you on your very kind offer to volunteer at Downright Excellent. If you would like to email me your details (deb@deeanddee.co.uk), we can explore opportunities for you to get involved with us.

      Many apologies for not getting back to you sooner on this. Look forward to hearing from you again.

      Best wishes, Debbie Allen, Chair, Downright Excellent

  12. Hello, i’m Nataly and i’m a mother of 2 years old boy with DS. Actually we live in Italy, here is the education’s level for our children is very high. We are going to move in London, becouse of my husband’s possible work, but we have some questions about care and therapy for such kids there. For example: is it possible for them to study in ussual school with all other children? How much around the phisioterapy and all other necessary cares cost? if there is the sort of rasizm against them in England? Another our great problem is that actually my son dsnt speak still any language, but has started to understand italian. As me and my husband we both dnt speak English in correct way, we fear to create even more problems to teach our son to communicate with world around. Maybe i’m wrong to ask here, but i kindly ask all possible advises. Sure we want only the best to our son and maybe better for all our family to stay in Italy, at least for near future. I’m sorry very much if i ‘m wrong to ask here, but it was the first site about down syndrome children i have found, maybe i had to look for this kind of information in other places, i beg pardons if i’m wrong. Thank you very much! Best regards!

    1. Hello Nataly, Thank you for contacting us at Downright Excellent. If you are moving to London and would like to put your family’s name on the list for your child to attend our speech and language therapy sessions, we would be delighted to welcome you. As a 2 year old, your son would do very well with other pre-school age children in our Friday groups. We also have other children in the group for whom English is not their first language – so this would not be a problem for your son. Most of the children from our Friday groups progress into mainstream schools and live quality lives with far less prejudice than was experienced in the past.

      If you would be interested in further information – especially if your move to London is definite – then please get in touch again.

      Best wishes, Debbie Allen, Chair, Downright Excellent

    2. Hi Natalie, I also wanted to tell you that both myself and my partner are Italians living in London, this is just in case you end up moving here. Good luck with everything Laura

  13. Hi

    I have a 3 week old baby who has been diagnosed with Down’s Syndrome. Would you be able to send me some information on membership and what you can offer.

    Many thanks

    Nikki

    1. Hello Nikki

      Thank you for getting in touch with us. You should contact Beth Davies, one of our Speech and Language Therapists (bethamydavies@yahoo.co.uk), who will be able to advise you about what we can offer you and your child. We would be delighted to welcome you to Downright Excellent.

      Best wishes

      Debbie Allen
      Chair, Downright Excellent

  14. I have a 3 years old son with DS. I would like to become a member and benefit from the services, especially speech and language therapies. Can you please contact me with details?

    1. Certainly Fatma, I will contact you via email.

      Regards

      Debbie Allen
      Chair Downright Excellent

  15. Hi there, my name is Laura and I have a three weeks old boy with DS, his name is Alex:-)
    Is it possible to join your meetings/classes or is it too early? We are looking to meet people who are going through the same experience to have support and give our little angel the best start in life! Can somebody help us pls? Laura, Paolo & Alex

    1. Hi Laura

      Thank you for getting in touch with us! We would love to welcome you to our sessions, so I will put you directly in contact with our Speech and Language Therapy team to organise a suitable date to come and visit.

      Best wishes,
      Debbie Allen, Chair, Downright Excellent

      2. Hey Debbie I was wondering if somebody can contact me. Not sure if it’s due to the holiday period but I haven’t heard since. Can I just come this Friday? Alex is now 8 weeks old :-)) many thanks Laura

      3. Hello Laura, Beth will be in touch by email to arrange a time for you to visit. Hope Alex is doing really well! Best wishes, Debbie

  16. Hi there,

    My name is Lottie and like Laura in above post, I have a 4 week old baby who has just been diagnosed with DS. Little Oscar is 7 weeks premature so he’s not even supposed to be here yet but would like to give him the best start in life so looking to meet people in similar situations and join groups that will be able to help him along with his development. Can you help us?

    Regards, Lottie

    1. Hello Lottie

      Thank you for getting in touch with us and welcome to your little one! We would be delighted to welcome you to our ‘family’ at Downright Excellent, so I will put you in touch with one of our Speech and Language Therapists via email.

      Wishing you all the very best

      Debbie Allen
      Chair, Downright Excellent

  17. Hi I’m interested in speech and language sessions for my daughter who is nearly 2 years old. There doesn’t seem to be much available in my area. I would be most grateful if you could send me more information on how we could attend.

    Thanks

    1. Hello, we will get in touch with you by direct email to give you more information. Best wishes, Debbie, Chair, Downright Excellent

  18. A friend of a friend recommended that I look you up as I have a son with DS. I live in limehouse, east london. Would it be possible for me to come along to one of your Friday morning sessions with my son?

    Thanks, Lisa

    1. Hello Lisa, we will get in touch with you via email to give you more information. Best wishes, Debbie, Chair, Downright Excellent

  19. Hello.
    We are possibly moving to London soon with our daughters, one with DS. She is 9 months, so its very new to us. We just started finding our way were we live now, and now we are moving..Hopefully I can get her into you program, meet other parents and also get some guidance in what she needs etc.
    Your organization looks great, I am looking forward to meeting you 🙂
    Thanks,

    Olga

    1. Hello Olga, Thank you so much for contacting us. Once you’re in London, why don’t you come and visit on a Friday to see what we do? We would love to welcome you and your daughter! Best wishes, Debbie Allen, Chair, Downright Excellent

  20. Hello,
    My name is Lucia Villalobos. I am 24 years old.I am very interested in working as a volunteer with Down Syndrome children. I am Speech and Language Therapist and I am teacher in Speech Language and Hearing.I would like to know what shall I do to be volunteer.
    Many thanks,
    Lucia.

    1. Hello Lucia, Thank you for your interest in volunteering with Downright Excellent. I will follow up with you via email. Best wishes, Debbie, Chair, Downright Excellent

  21. Hi, my name is Jo and I have a 9 week old little girl, Isla, who was diagnosed with Down’s Syndrome shortly after birth. We heard about your group through both the Downs Syndrome association and a local group in Ealing and it sounds excellent. As others have posted above we want the best for our little one and would love to join your development groups and learn more about what’s best for her.

    Best Wishes,
    Jo

    1. Hello Jo, Thank you for getting in touch with us. I will follow up with you by email to arrange a time for you to come and visit us. Best wishes, Debbie, Chair, Downright Excellent

  22. Hi
    I have a son who is one I would really like to bring him to your group.
    Can you let me know the days and times of the group?

    Thanks

    1. Hello Kerri, Thanks for getting in touch with us. I will reply more fully through your email address. Best wishes, Debbie Allen, Chair, Downright Excellent

  23. Hi there, I got in touch with you when my son was born but was out of the country for a while. Can we now come to see you please? Thanks

    1. Hi Laura, come along to the stay and play sessions on Friday morning at Golden Lane Children’s Centre from 10am. We’d love to you meet you and your son!

  24. Hi there

    I also were in touch with you some months ago. We have a little girl 15 months, who has DS. We are moving to London in aug, and will be living in Kew. Can we come by on a friday after summer? And how do I sign Selma up for speech therapy or other classes? I am really excited to meet other parents with these beautiful DS children.
    Kind Regards Olga

    1. Hi Olga, it would be lovely to meet you and Selma when we start for the new term in September 2013. We have stay and play sessions for new children where you can meet other parents and find out more about the speech and language therapy. Contact downrightexcellent@googlemail.com nearer the time and we can give you more information. Thanks for getting in touch!

  25. Hi Olga, just to let you know that we will be moving to Richmond in the summer, very close to Kew if you ever want to meet up. My beautiful little man is 10 months today 🙂 take care. Laura

    1. Hi Laura,
      Of course I want to 🙂 I don´t have a UK number yet, but you can reach me on mail : obraut@mac.com.
      You made my day, I am so happy that you will be in the ” neighborhood”
      Talk soon.
      Olga 🙂

  26. Hello,

    I am looking for volunteering opportunities and I wondered if you had anything available? I would be able to volunteer on Saturdays. I have experience working with children with a range of abilities.

    I look forward to hearing from you,

    Thanks,

    Lydia

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